Health Advocacy Bulletin

Health Advocacy Bulletin is the official Journal of the Health Advocacy Program at Sarah Lawrence College. Archived issues from the most recent issue back to the Fall 1997 issue are available for download in PDF format below.

Health Advocacy Bulletin is also available in hard copy format. To request back issues, or to subscribe to receive future issues, please e-mail Crystal Greene.

Letter from the Director
A Matter of Life and Death

by Vicki Breitbart

Many of us are well aware of how the present healthcare system can make the final days of life an unnecessarily painful and devastating experience for our loved ones, and for ourselves. About a quarter of all Medicare spending is for the last year of life. Yet, the great cost of this care has left many human needs unmet.

People in this country are living longer and those with a terminal illness need to have a say about what treatment, if any, they want and how they spend their final days, or even months and years. Person-centered, family-oriented end-of-life care requires compassionate communication and shared decision-making. It requires attention to the right to self-determination about pain and symptom management, and a close look at the ethics and efficacy of continued routine medical interventions. For this vision to become a reality we will need significant changes in how and where our society provides care; we will need to ensure that the terminally ill are cared for in environments that value personal autonomy and comfort, in addition to safety, which has traditionally been the main concern for the elderly and dying. | Read the full article

Interview with Laura Weil, Director Emeritus of the Health Advocacy Program

The Affordable Care Act: A New Tool to Reduce Recidivism

Affordable Care Act Outreach in the Mississippi Delta

Experience as a Customer Service Representative at Montefiore Medical Center

Sick and Tired of Being Sick and Tired: Leveraging Law to Facilitate Citizen Epidemiology

Using Motivational Interviewing in Health Care Settings

Fourth Annual American Association of Medicine: History Night

A Diagnosis of Philanthropy: Carnegie and Rockefeller and the Medical Profession

From History Paper to Presentation

Negro Health Week: A People Claims Its Health

Sculpting a Sexted Society: The Rise of Medicine and the Surgical Eradication of Intersexuality

Processed to Perfection: Milk and American Idealism, 1880-1930

Susun Weed: Advocating Ancient Healing for a Healthful Future

The Case for Palliative Care

Student and Alumni Updates

Letter from the Director
One of Health Care’s Better Kept Secrets

by Vicki Breitbart

In my decades as a health care advocate helping clients through the maze of hospital and treatment services, I have had intimate knowledge of preventive, diagnostic, curative, palliative, and end of life. Yet only recently, completely by accident, did I come across the entire field of rehabilitative medicine, literally by accident.

I was hit by an ambulette on February 10, 2014. Had this not happened, I probably would have never gained an intimate understanding of rehabilitative medicine, a valuable aspect of our health care system. I know several people who praise the effectiveness of rehabilitation medicine and have had my own experience with outpatient physical therapy, but I had no knowledge of what quality comprehensive inpatient rehabilitation medicine entailed.

Although my accident took place close to our local hospital, I was taken to Lutheran Hospital, a designated level I trauma center in Brooklyn, NY. Level I trauma centers are comprehensive regional resources capable of providing total care for every aspect of injury—from prevention through rehabilitation. A recent study reported in Kaiser Health News showed that extended travel to a trauma center can be life threatening. For many reasons, I was lucky a trauma center was relatively close to the site of my accident.

In the hospital I was assigned a trauma doctor, an internist, a cardiologist and a neurologist. Typical of hospital care, there was little coordination between the different services, and in order not to get unnecessary tests and medications, I had to rigorously advocate for myself. Additionally, I had to advocate strongly for the type of rehabilitation care that was best for my recovery. Yet, once I was transferred to the Lutheran Sub-Acute Rehabilitation Center, located in the very same medical system’s hospital, I entered a whole special world of medicine with a distinctive difference in care. | Read the full article

Margaret Keller Lecture 2012: Dorothy Roberts on The Biopolitics of Race and Health

EXHALE: Add Your Voice

Student and Alumni Updates

Letter from the Director

Violence Is a Health Issue

By Vicki Breitbart

The Newtown massacre brought the problem of gun violence to the attention of the American public in a dramatic way. While certainly tragic, this was not an isolated event. There have been seven massive shootings this year and it seems that reports of gun deaths appear in the media almost every day. Gun deaths have become a regular occurrence in our country and the numbers are alarming. There are reportedly over 32,000 firearm deaths in a year, exceeding traffic fatalities in this country. While the massive shootings draw a lot of attention, two-thirds of those who die in shootings are individuals in homes with easy access to guns. States that have high gun ownership rates have two times the suicide rates with guns as states with low ownership.

Often the argument against gun controls comes from those who believe that guns are necessary to protect women and children. In reality, guns in the home are reported to increase youth suicides and accidental deaths. The idea that guns make women safer is blatantly false. A 2011 review from the Harvard Injury Control Research Center reported that "far from making women safer, a gun in the home was a strong risk factor for female homicides and the intimidation of women." Intimate partner homicide accounts for nearly half of the women killed every year and more than half of them are killed with a firearm. The risk of homicide is eight times greater for women in abusive relationships when the perpetrator owns a gun. A study of 46 large urban centers found that laws restricting gun access by people with domestic violence restraining orders reduced murders of women by 19 percent. Yet, even when women get orders of protection against their abusive partners, in many instances the perpetrators are still allowed to own and keep their guns, often with deadly consequences.

There are now active discussions about gun control laws at the state and federal level. These moves towards legislation are all critically important steps, but we need to do much more than this to address the pervasive culture of violence in America. The suggested changes in gun ownership warrant support, but a broader perspective is necessary to make real and lasting change in the acts of violence that permeate our daily lives. Much of my past research was about the pervasiveness of intimate partner violence (IPV)—emotional, sexual and physical abuse between two individuals in a relationship, but not necessarily in a domestic setting. According to the Centers for Disease Control, IPV affects 3 out of 10 women and 1 out of 10 men. We found that many acts of violence in relationships are taken lightly and accepted as the "way things are." A lot of abusive behavior in relationships goes unrecognized as violence. In my work, many women didn’t identify what happened to them in their relationships as rape until they realized that the definition included any unwanted or coerced sex. Violence in relationships that is undefined can be more than two times more frequent than perceived partner violence and is associated with at least as many health problems. | Read the full article

It was a lovely day in May when I got the call that would change everything. My 93-year-old mother had been taken to the emergency room with excruciating pain across her midsection. Many of you have lived through something similar—an emergency situation with an elderly parent or even long-term illness of a parent—and know that I was about to enter the macabre and disorienting world of medical care and potentially long-term care for the elderly.

My mother had been living alone and was very independent. The hardest conversation we ever had was about taking away her car keys. Yet in the next few months I saw my mother’s life savings drain away and saw her go from an active older adult to someone with limited hearing, sight and mobility, with recurring medical problems. She became someone who truly wanted to die. Those months brought home the difficulties of getting the comprehensive quality care needed for an ill older American.

Over the past century, the U.S. the population aged 65 or older has increased more than threefold from 4.1 to 12.9%. Between 2010 and 2050, the number of Americans 65 and older is expected to more than double. This has been called the “silver tsunami” because our country’s medical and social systems are totally unprepared to deal with this growing phenomenon. The issues of aging have been on the periphery of health care for too long. As we can now look forward to the full implementation of the Affordable Care Act (ACA), it is still unclear what will happen with regard to care for the elderly. There are more measures for preventive care for the elderly in the ACA and these measures are necessary. But for those with medical problems, will anyone address the uncoordinated and badly managed care of the elderly ill? | Read the full article

Letter from the Director:
The Myths and Realities of Health Care Reform

By Vicki Breitbart

As the Presidential campaign heats up, there is an increasing amount of talk about health care reform. When asked about the most important issues in the 2012 election, polls show that health care is second only to the economy as the most pressing issue on the minds of the U.S. electorate. Health care reform as presented in the Affordable Care Act (ACA) has become extremely politicized. The term “Obamacare” is frequently used to describe the plan even though it was instituted by an act of Congress, not by executive fiat. Several myths have emerged that have distorted the reality of the ACA. Even if we would want it to be, it is not a government takeover of health care; it will not cost a dime to implement it if the cost-saving reforms go into effect; it only mandates health insurance if you can afford it; and it will benefit millions of us even if we already have insurance. The plan is not perfect, and it does not benefit everyone, but the fact that many individuals are already being positively affected is being lost in the debate.

There is a lot of misunderstanding about the ACA and support for it is being eroded by political rhetoric. While the polls show a decline in support, more people today think that the plan should be expanded, not repealed. In a recent poll, people changed their attitudes about the ACA once they learned how it could benefit them. As advocates dedicated to creating a health care system that is equitable and advances a just and humane society that benefits us all, we need to counteract the myths surrounding the ACA and not overlook the already existing and potential benefits of the law. This letter will cover just some of the pieces that have already been implemented and foreshadow some of what is to come. | Read the full article

Letter from the Director

By Vicki Breitbart

The economic crisis dominated the domestic news the week I started as the as the new Director of the Health Advocacy Program (HAP). The unprecedented power struggle in Congress about how to deal with the debt crisis and then the downgrade of the U.S. credit rating were major headlines. The economic crisis has been going on for some time. As I write this today, we still find 13.9 million people out of work, and many more who are hungry and living in poverty, with no solutions in sight. Even those working in low-paying jobs are finding it hard to survive. Over 10 million people who are working are living in poverty. A recent New York Times front page article reported that “another 2.6 million people slipped into poverty in the United States,” making the number of Americans living below the official poverty line the highest since the government started collecting this data. More children are being affected; in Westchester, the number of children living in poverty climbed from over 19,000 in 2006 to almost 28,000 in 2009. At present, 22 percent of children in the United States are living in poverty—more than one in five—and 18 percent of families are “food insecure.”

In the HAP orientation we showed Unnatural Causes, a film made several years ago by California Newsreel, which demonstrates the impact of income inequities on health disparities. As compared with high income individuals, low income Americans are more likely to report that they have been diagnosed with chronic conditions, particularly depression, high blood pressure and diabetes. Recent information indicates that this situation has worsened; the gap between rich and poor continues to grow. In the last few decades, the income of the top .01 percent of Americans has increased fivefold, while the income of most other groups has basically remained the same or decreased. All of this is affecting the health and well-being of Americans. | Read the full article

In This Issue:

Letter from the Director: Adversity Creates Opportunity for Health Advocates

Letter from the Editor

Letter from the Incoming Director

Reports from the Field

Patient-Centered Care at NYU Medical Center

How I Ended Up in Rehab…It’s Not What You Think!

Using Hand Feeding to Enhance Quality of Life for Nursing Home Residents with Dementia

Working as a Emergency Department Post-Discharge Patient Representative

States Prepare to Implement Health Policy Changes by 2014

Point of View: Health Care Reform One Year Later

Faculty News

Ageism in the Job Market: Tips to Overcome Prejudice and Maximize Opportunities

Upcoming Events

Letter from the Director

By Laura Weil, Health Advocacy Program

A recent Commonwealth Fund report, A Call for Change: The 2011 Commonwealth Fund Survey of Public Views of the U.S. Health System, says 72 percent of Americans feel that our health care system should be significantly rebuilt. According to the report, nearly three quarters of us had problems accessing health services, experienced poor coordination of care and worried over costs and labyrinthine health insurance procedures. This research confirms our anecdotal and personal sense of a dysfunctional system, providing extensive evidence of wastefulness and disorganization in the way health care is structured and delivered. It builds on earlier findings that exposed unexplained regional discrepancies in standards of care that result in substandard clinical outcomes for many.

This comes as no surprise to us in the health advocacy field, but what is surprising is how far the public has moved toward this point of view. It was not so long ago that most Americans strongly espoused health care in the United States as the best in the world. Now, apparently only a minority think this is true. This is a sea change in perception.

Next must come an understanding that the essential structure of our system makes it disproportionately expensive. The dependence on commodified health services and profit-driven commercial insurance reimbursement creates insurmountable inefficiencies and limitations. It pushes people who need primary care into expensive emergency rooms simply because they can’t get a timely or affordable appointment in a clinic or doctor’s office. Our lack of effective care coordination leads to repeats of expensive diagnostic procedures, poorly controlled chronic disease and expensive and dangerous hospital readmissions. Inaccessible prenatal care leads to increased infant mortality and morbidity at enormous fiscal and emotional cost. Add to that the astronomical expenses of inappropriate end-of-life interventions, and it’s no wonder that the U.S. health care system is a shameful outlier among our peer nations in terms of money poorly spent. The growing sentiment in the country that we need a total health system overhaul could give us some reason to celebrate. One can hope that this groundswell of public opinion will eventually push legislators and policymakers to act responsibly and fuel substantive change.

In the meantime, the situation creates challenges and opportunities for us as health advocates. We can drive innovative, patientcentered programming at the policy and organizational levels, and we can contribute to coordination and efficient navigation at street level.

Atul Gawande’s recent New Yorker article, “The Hot Spotters,” describes an example. Jeffrey Brenner, a family physician in Camden, New Jersey, discovered that just one percent of people in the town used 30 percent of the health care dollars spent. Brenner made the interesting connection that high health care costs in this low-income population directly correlated to poor care. He started a program that assigned what he called “health coaches” to support these high utilizers of medical services. The coach’s job is to be available, supportive and proactive in making sure that clients have what they need to keep their chronic conditions under control and stay out of the hospital. It comes as no surprise to health advocates that this innovative program kept people healthier AND reduced health care expenditures by a whopping 25 percent. The result was amazing concentric circles of benefit—healthier, more productive people and reduced costs. | Read the full article

In This Issue:

The Hospice Experience: A Conversation with Rockland Residents about End-of-Life Issues

Providing Information and Support for College Students Diagnosed with Mental Illness

Patient Safety Movement

Update on Student Work in Louisiana

The Mossville Community Health Needs Assessment: Process, Findings and Advocacy

T-tests and Frequencies and Chi-squares: Collecting and Analyzing Health Assessment Data with Mossville Environmental Action Now

Faculty News

Margaret Keller Distinguished Lecture

Letter from the Director

By Laura Weil, Health Advocacy Program

As many of you may have already learned, I will be stepping down as Director of the Health Advocacy Program this summer. It’s a privilege to have been at the helm during a period of growth and increasing stability, and I have every confidence that the program is now rock solid and will weather a change in leadership successfully at this time. We have had consecutive years at maximum enrollment selected from a large and capable applicant pool. This has been accompanied by robust engagement and retention of excellent students. The College has renewed commitment in the growth and health of the Health Advocacy Program, and the transition to a new director is being managed in an orderly, comprehensive and thoughtful manner.

There is plenty of time to do this right. A search committee is being assembled for a national campaign to select a new Director, and substantial transition structures will be in place so that both continuing students and the entering class of 2011 will see a seamless move forward.

This is an extraordinary moment in time for health advocacy. While we remain the recognized master’s degree program in the field, several on-line certificate programs have sprung up as the public recognizes the momentum of the field. While you might think that these certificate programs would be creating competition for us, in reality they are increasing the public’s awareness of our program and our “gold standard” status as the pre-eminent health advocacy program in the country. That said, now is the time for the Sarah Lawrence Health Advocacy Program to augment our position by providing additional and independent opportunities for training that will meet the needs of students and professionals who are seeking specialized skills. Identification and implementation of those curricular opportunities and potential collaborations will be a goal in the next phase of the program’s growth. | Read the full article

Letter from the Director

By Laura Weil, Health Advocacy Program

On the health care legislation front, everything seemed overshadowed by the almost astonishing passage of the federal health care reform bill. The eventual effects of this ground-breaking event will mostly play out over the next few years, and the Health Advocacy Bulletin will reflect on the coming changes from an advocacy perspective as the process of implementation unfolds.

One area, though, that will definitely have to be watched closely is the continuing and expanded ban on federal funds for abortion coverage. President Obama reaffirmed the Hyde Amendment this year, which prohibits the expenditure of federal funds on abortion except in a narrow set of circumstances involving rape, incest or danger to the life of the pregnant woman. This impacts no small segment of the population. It includes Medicaid recipients—low income families with children, pregnant women and individuals with disabilities—and also the less broadly recognized group of women in federal prisons, the armed forces or the Peace Corps and Native American women who receive their care through Indian Health Services. Health reform legislation threatens to expand that restriction to any woman covered by a plan that receives any federal subsidies. This could have a significant and devastating effect on womens’ reproductive rights. Health advocates must take notice. | Read the full article

Letter from the Director

By Laura Weil, Health Advocacy Program

The current health care reform debate has created interesting collisions of opinion. Here’s one that’s perhaps unexpected: there is resistance to finding out which medical treatments actually work best.

There are those who are opposed to engaging in what’s being called comparative effectiveness research—determining the relative efficacy of treatments and drugs already on the market. Wouldn’t we want to know what treatments work best? And wouldn’t we want to take advantage of that knowledge to provide people with the best and least dangerous treatments for diseases? Apparently, some people don’t think so. Opponents have raised the flags of one-size-fits-all medicine, of limitations on physicians’ autonomy to prescribe and of denying patients choices and treatment options. We are so caught up in the American ideal of self-determination that we are threatened by the idea of “standardized care” or that we might be forced to use the best, safest, most effective treatment for a disease. What’s at issue here is that the best treatment might sometimes be the cheapest, or the oldest or not the new drug that “Bob’s cousin got.” We’d rather be swayed by glitzy advertising and bragging rights to “the newest” therapies than by having evidence that determines what actually works best.

The temperature really gets elevated when there’s talk about mandated rather than recommended clinical guidelines based on comparative effectiveness research, and about value-based purchasing that might limit access to exorbitantly expensive treatment that has no greater benefit than less pricey alternatives.

But clearly we need to do something to get the U.S. health care system out of the pit of being 37th on the World Health Organization’s ranking of overall health care, despite being by far the most expensive system in the world. | Read the full article

Letter from the Director

By Laura Weil, Health Advocacy Program

It’s with great pleasure and humility that I’ve agreed to continue my work on behalf of the Health Advocacy Program. It’s an exciting and challenging time to be here. I’m indebted to the College, the faculty, alumnae/i, students and organizational partners in the field for their generous support of the Program – and for giving me an ongoing opportunity to contribute to the growth of our profession.

January’s U.S. News and World Report cites Patient Advocate as a “cuttingedge career” for 2009. I’ve spent the past 20 years as a patient advocate—and just as long trying to explain what “health advocacy” means to polite but mystified people—so I find their prediction to be an astounding development. It’s a clear indication that our health care system’s catastrophic shortcomings have finally reached the tipping point in public awareness. | Read the full article

Letter from the Interim Director

By Laura Weil, Health Advocacy Program

The Health Advocacy Program has enjoyed many successes over the last academic year, and we look forward to continued vitality and growth. We graduated nine students in 2007-2008, and anticipate sending seven more professionals into the field in May. With the support of Graduate Admissions, recruitment has taken significant steps to increase inquiries and applications, attracting a greater percentage of well-qualified younger students to the program. This has given the entering class of 2008-2009 a healthy mix of traditional full-time students to complement our customary population of part-time career-changers. In addition, the entire faculty has enthusiastically come together for several meetings and a day-long retreat to work on curricular enhancements. We are honing the connections among the courses to support a cohesive curriculum that will better prepare graduates for success in the broad profession that is health advocacy. | Read the full article

Letter from the Interim Director

By Laura Weil, Health Advocacy Program

We are presently in the midst of an extraordinary time for health advocacy. Our field seems to have come to the surface of everyone’s awareness—a Google search for health advocacy now produces over 29 million hits. Universal health care is suddenly one of the top issues in a presidential election. Those of us who identify ourselves as health advocates are not as often asked “um… what is a health advocate exactly?” Rather, we often hear that “We really need health advocates. I wish I’d been able to find one when…” This change speaks to a substantive recognition of our role as it relates to improving the experiences of people encountering the health care system’s deficits, a prevalent acceptance of the fact that U.S. health care is not necessarily the best, and that our wild expenditures are not producing superlative care. There is a growing sense that we might actually be able to change something this time around. | Read the full article

Illness Narratives and Health Advocacy (excerpt)

by Sayantani DasGupta Faculty, Health Advocacy Program

What is it to experience suffering? Almost six years ago, the course “Illness Narratives: Understanding the Experience of Illness,” was introduced to the graduate program in Health Advocacy by Dr. Marsha Hurst and myself with this question in mind. We initially posited that by reading narrative accounts of illness and disability, health advocates could be trained in a deeper understanding of the individuals with illness and disability with whom they would work in the future. Part of the inspiration for such a course was the then burgeoning field of narrative medicine, a term coined by Columbia University physician and literary scholar Dr. Rita Charon. Therefore, our initial inclinations were to privilege the written text, as well as the individual experience. However, these notions were quickly challenged when we considered the needs of the students in the Health Advocacy program, who have historically brought a wealth of professional and personal experience in health care, illness, and caregiving. We would have to construct a course that not only drew from narrative texts, but personal reflection, a course in which students could read, write, discuss, and share, a course in which they would have a chance to enter the well crafted narratives of gifted writers as well as the raw and in-the-moment narratives of ordinary individuals. The course would additionally address the social, cultural, and political contexts of illness, the relationships of the ill to their caregivers, and the experience of illness in families, communities, and societies... Read the full article

Educating for Advocacy: Using Patient Voice to Construct a Model of Theory and Practice (excerpt)

by Constance Peterson, HA '94, Faculty, Health Advocacy Program

While the past few decades have brought great advances in medicine and technology, these advances have occurred within a healthcare system comprised of complex bureaucracies organized more for the benefit of service providers than patients, families or consumers. Health profession educators are in a unique position to question whether these trends best serve patient interests by using education to move the system to a more patient centered focus. The delivery of quality healthcare in a patient centered system is dependent on attention to patient voice; issues of empowerment, autonomy, access and education are integral to the care itself.

Education of the health advocate is distinguished from other health professional education by our attentiveness to the centrality of voice. HAP students come to understand the patient’s voice through privileging their own experience, fieldwork contact with patients and providers, and integration of voice into a core curriculum. Students are challenged to find their own voice as health advocates and to acquire essential knowledge about themselves by engaging in self-reflection and becoming more comfortable with ambiguity, uncertainty and multiple perspectives... Read the full article

Special Insert: Executive Summary from Health Advocates in Research: A Participatory Conference

Letter from the Director (excerpt)

by Marsha Hurst

As you can undoubtedly tell from these brief but news-filled pages, the Health Advocacy Program has had an incredibly busy and productive and exciting year. It really began with the 25th Anniversary Conference held last January on “Advocates in Research," the Executive Summary of which forms the bulk of this Bulletin. The Conference was extremely successful and very timely, connecting not only with growth in the area of advocacy—as witnessed by some of the new careers noted in our section on graduates—but with our application to the Ford Foundation, via the Council of Graduate Schools to develop a new program in Applied Research Ethics (see Rachel’s article in this Bulletin). We are now planning our second annual conference, on an equally timely and important subject: “Advocacy & Genetics: Arenas of Engagement” (see Save the Date announcement). More and more prospective students come to us with an interest in combining advocacy and genetics, if not by earning two degrees, then by taking courses that integrate the two fields.

By holding these conferences, Health Advocacy is bringing advocates together here at Sarah Lawrence College. But we are also bringing our experience and understanding about advocacy and educating advocates to others by presenting papers, and by being part of a new networking movement among advocates and educators of advocates. We have been particularly excited about and fulfilled by the discovery of new colleagues in the advocacy education area: JoAnne Earp and her assistant Elizabeth French at the School of Public Health, University of North Carolina in Chapel Hill, and Meg Gaines, at the Center for Patient Partnerships, University of Wisconsin Law School. Meg teaches patient advocacy in the classroom and the “clinic” to any interested graduate and professional student at the University; and JoAnne and colleagues are developing patient advocacy courses for public health graduate students at UNC. We will report more about the work of these colleagues, and about the ways in which patient and health advocates are connecting with each other for common purposes, in future Bulletins... Read full article

Special Insert:

Executive Summary from Health Advocates in Research:
A Participatory Conference

On January 14, 2005, more than 100 health advocates gathered at Sarah Lawrence College for a day-long participatory conference on “Health Advocates in Research.” This was the first in an annual series of conferences about current health issues and new arenas of advocacy. The conference celebrated the 25th anniversary of Sarah Lawrence’s pioneering Health Advocacy Program.

The organizing committee for the conference represented many different institutions and concerns. Attendees included advocates working in research settings; members of voluntary associations; advocates from disease-specific and issue-oriented organizations; advocates from government programs and institutions; educators; and the students, faculty, and graduates of Sarah Lawrence’s Health Advocacy Program.

The consensus of the planners was that the conference met a strong need for health advocates involved in research to exchange ideas and experiences, reflect, and envision the future. They decided to focus on two core questions:

What are the roles of health advocates in research and what should these roles be?

What ethical principles should guide our participation in research?

The morning sessions explored the roles of health advocates; afternoon discussions centered on ethical issues. At the end of the day, the major points that came out of the conference were summarized by Ngina Lythcott, Dean, Mailman School of Public Health, Columbia University. Byllye Avery, founder of the National Black Woman’s Health Project, closed the day on a high note with a “Call to Action.”

Special Issue: Health Advocacy and Human Genetics

In This Issue:

Barth Syndrome—Responding to a Genetic Disorder: A Case Becomes a Cause

Introducing our Guest Editors

Debating Autism

Autism: Piecing the Puzzle—Together

A Response: Vaccine Safety and Autism: The System Is “Broke,” Let’s Fix It

A Brief Reply

In Search of Common Ground: A Survey of Publicly Sponsored Debate About Genetics and Reproduction

Race and Genetics: Not a Matter of Black and White

Genetic Privacy—What’s Happening at the Federal Level?

Eugenics, Reprogenetics and Newborn Screening: A Valuable Day of Discussion

Genetics and Health Advocacy: A Dual Degree for 21st Century Healthcare

Advocates and Genetic Counselors, Unite!—An Internship at The March of Dimes Pregnancy and Newborn Health Resource Center Lays the Foundation for Future Genetics Advocacy Initiatives

Clinical Research and Tissue Banking: An Ethics Perspective

Researching Genetic Conditions on the Internet

From the Health Advocacy Program Director

From the Human Genetics Program Director

Responding to a Genetic Disorder: A Case Becomes a Cause (excerpt)

by Katherine R. McCurdy, founding Board Member of the Barth Syndrome Foundation, Inc.

It was a Saturday in April 1988 and my mother-in-law’s 70th birthday. Unbeknownst to her, the entire family was arriving from around the country to celebrate. Our only hitch was minor, we thought: our two-year-old son had a cold and had awakened early, crying and uncomfortable. When we picked him up, he seemed OK (except for some congestion), but my husband and I immediately noticed that his chest was heaving visibly with every rapid heartbeat. As morning broke, I called the pediatrician to ask if he could squeeze us in, which he graciously did. Upon examination, the doctor agreed that my son, Will, did not seem in distress; he was concerned, however, that Will might have an infection that would require intravenous antibiotics. He instructed me to go to our regional tertiary care hospital’s Emergency Room where the Chief of Pediatric Cardiology, whom he had already alerted, would meet us. As he spoke, I heard the first of many medical terms that were completely new to me that day—”tachycardia.” We were already aware of some mysterious gross motor problems that our son had exhibited, but we had taken him to many of the best medical centers up and down the East Coast, and none of the top-notch specialists had been able to make a diagnosis. Anything cardiac was new. I remember wondering in the ER whether all this might lead to something bigger and broader. Little did I know that we were embarking on the journey of a lifetime... Read the full article

Breast Cancer Survivor Influences Research and Public Policy Processes

Developments in Human Research Protection

A Friend in Need: How a Small Program Can Make a Big Difference

New HAP Group Focuses on Health Policy

Working Together To Improve the End-of-Life Experience

Communicating with Children and Adolescents with Life-Limiting Conditions: A forum co-sponsored by the Health Advocacy Program and the Westchester (NY) End-of-Life Coalition

From the Health Advocacy Program Director

Beyond the Bull's-Eye: Advocates Take Aim at Lyme Disease (excerpt)

by Yvonne Bokhour

How much do you know about Lyme disease? Are you aware of its symptoms? Do you believe blood tests are reliable? How quickly do you think Lyme can be cured? Many of my neighbors have discovered the answers to these questions the hard way. They are ill, or their children are ill, or both. As they try to cope, they find themselves immersed in two battles: the fight to be well and the fight to be heard.

Lyme disease is an illness shrouded by uncertainty and controversy. Disagreements abound within the medical community, leaving patients caught in the middle. Their anguish, especially as Lyme proliferates nationwide, points to the urgent need for research.

In 1997, a tiny group of neighbors met in Wilton, Connecticut. We were all victims of the illness, and we were all worried by its spread. We were especially troubled by the threat Lyme posed to our children, who were exposed to ticks every day. To prevent more cases and help those afflicted, we arranged a seminar. Although we knew Lyme was prevalent, we were astonished by the turnout: 650 people filled Middlebrook auditorium. Volunteers soon found themselves fielding desperate calls from patients throughout Wilton, the tri-state area and indeed the nation. The Wilton Lyme Disease Support Group was then established to comfort those in need. Three years later, we launched a group for young people. Today, both are committed to providing emotional support to adults and teenagers in Fairfield County and beyond. Five hundred victims have now passed through our doors... Read the full article

In This Issue:

Treading Firmly Through the Medical Minefields: How a Personal Odyssey Led to a Lifework of Advocacy

Health Advocacy Students in the Field

Medicare Prescription Drug Coverage: Going, Going…Where?

Sarah Lawrence Hosts Seminar for Journalists

New Communication Mini-Course Debuts

HAP Graduate Named SLC Associate Dean

No Medicare Prescription Drug Benefit from this Congress

Humanizing Cancer Treatment: Patient Advocates Can Make the Difference

SHCA Convenes in Washington, D.C., for its 32nd Annual Conference

From the Ethics Files

From the Health Advocacy Program Director

Treading Firmly Through the Medical Minefields: How a Personal Odyssey Led to a Lifework of Advocacy (excerpt)

by Maggie Hoffman

I never realized that I was practicing for a lifetime of caregiving and advocacy when my father was diagnosed with acute myelogenous leukemia. After exhausting standard treatments, my Mom and I began looking into other options. I found myself selling my Dad to researchers: “I have a 53-year-old male who is extremely motivated, with great insurance and the ability to travel cross country.” I had to learn medical terms and scientific concepts in order to gain opportunities in research protocols. My Dad received an autologous bone marrow transplant in Seattle and, months later, he was using an experimental, tiny, constant-infusion pump to receive small doses of chemotherapy 24 hours a day.

In truth, advocacy skills were far more necessary on a day-to-day basis, as no one is taught how to be a patient, a consumer and a self-advocate before entering the healthcare system. Family caregivers have to become advocates by proxy. In my case, that translated into: decorating the hospital room with posters from home so that my Dad would be more comfortable, checking the medications before he took them, asking a doctor to wait until he was awake before telling us the next plan of action. It was so important to keep my Dad in the decision-making loop, even when he was feeling weak and ill, even after he had a stroke and was "not himself"... Read full article

From the Health Advocacy Program Director: The Cuban Health System and the American Public’s Health

The Protection of Human Subjects in Clinical Research (excerpt)

by Ruby H. Greene

In the biomedical context, therapy ordinarily refers to a set of activities whose primary purpose is to relieve suffering and to restore or maintain health. The foremost goal is for the recipient to benefit medically from the new drug, vaccine, treatment or diagnostic procedure being tried. By contrast, research or experimentation refers to a set of activities whose primary purpose is to develop or contribute to generalized knowledge about the chemical, physiological or psychological processes involved in human functioning. Its aim is to provide information required by the researchers.

Biomedical experimentation using human subjects falls into four broad categories: therapy, research, therapeutic treatment, and non-therapeutic treatment. All such experimentation, whatever its purpose, raises serious ethical challenges and concerns. These include recruitment and payment of human research subjects, justification for payment, payment models, finder’s fees, and risks to subjects. The question raised by all these practices is: Does informed consent adequately protect the patient, especially the disadvantaged patient, from economic exploitation? (Lind, 1990)... Read the full article

Is There a Health Care Safety Net in Westchester County?

by Desiree McDougall

Over 3.2 million people in New York State live uncovered by health insurance. In Westchester County this translates to approximately 200,000 people, a group predominantly comprised of low income families, nonelderly adults, and Latino immigrants. At some point in time all will require health care services. Without these services this population, and in fact society as a whole, may suffer insurmountable morbidity.

Who does this group historically turn to for care? Can these sources of care remain viable in this era of health care finance restructuring? Is this population a prime focus of concern for county or state policymakers? How can health advocates best assist these individuals? These questions were the focus of a conference held March 15, 2001, sponsored by the Westchester Health Action Coalition and moderated by Lois Steinberg, HAP 2000. Bringing together county legislatures, administrators from community health centers and local hospitals, officials from the county Department of Health, and concerned community activists, the conference sought to define the un/underinsured population and examine the current status of their “safety net” providers... Read full article

Three Decades of Organizing: Observations on the Future from the Past (excerpt)

by Terry Mizrahi, Ph.D.

Much of social work at the end of the 20th century has a “back to the future” ring to it. “Community” is back in vogue, as a context and as method and level of intervention. Those of us who began our social work careers in the expansionist era of the 1960s saw community organizing grow within and outside of social work. Yet even then, while it seemed like the place to be, exciting, romantic even, it still represented a small place and minority position in the profession in spite of the rich tradition in which it was embedded. The schisms between clinical and macro level interventions were there even in the friendly times, when it felt like the community organizing/social change perspective had a disproportionate influence on the field, given the relatively few students, faculty and schools with such concentrations.

As the political climate began to shift (and it has been moving to the “right” ever since), the flourish of visible social work activism in schools of social work and in social work agencies quickly diminished. Community organizing was replaced at first with a shift to planning and policy in the 1970s. Then, by the mid- 1980s (with a few exceptions), it almost disappeared as a major area of curriculum and career path, or was submerged within a more constricted administration/management or “macro” track. During this same time period, social work activism was primarily geared to creating a profession, modeled on law and medicine. Its goal, to gain control over the organization, structure, and relationships with clients, saw some measure of success in law and regulation at the federal and state. Currently however, managed care is stifling the autonomy of all clinical professions, including social work... Read full article

Children and Families in Health Care: Issues for Advocates (excerpt)

by Linwood J. Lewis, Ph.D.

In the three years 1993 through 1995, there were 165 million health care visits by children less than 15 years of age, of which 37 million were hospital visits. Eighty-five percent of these children were in health care for illness or injury. (NCHS, 1998) What happens when these children enter into the health care system? How can we best maximize appropriate care for children?

Children entering the health care system must negotiate the same bewildering maze of medical procedures, medical jargon, personal fears of pain and death and bodily dysfunction as adults. Yet children have less control over their health care and often less cognitive resources to help them to understand and process their experiences. Health care providers, parents and guardians often find it difficult to come to a consensus on the proper treatment of children in the system. These factors increase the vulnerability of children and can lead to less successful treatment outcomes. I would like to alert health advocates to some of the important issues concerning children in health care. My comments are probably most relevant for direct service advocates working with children presenting with a chronic condition, or pediatric inpatients... Read full article

Really Caring: Why a Comprehensive Healthcare System Includes the Arts

Holistic is an Adjective ... Not a Noun

Perioperative Audiotapes: Audio Rx for Surgical Patients

Musical Therapy in Hospice Care

Sanctuary Gardens: Roots—Words—Meaning

Assistance Dogs in Medical Facilities

Animal Assisted Therapy

Holistic Nursing: Nurturing and Balance

One Pathway to Pain Management

Massage: Mystique, Managed Care, and Money

Patients Rights Legislation: Elusive or Illusion?

A New Medical Specialty: Good for Patients?

Director's Desk

From the Editors

Advocacy Online

Really Caring: Why a Comprehensive Healthcare System Includes the Arts (excerpt)

by Susan Perlstein, M.S.W.
(Excerpted from an article in High Performance and reprinted by permission from the author)

You can gauge the humanity of a society by the way it treats its young and old, to paraphrase a familiar quote from Dostoyevsky. Holding the U.S. healthcare system to this yardstick, it's clear we're not very humane. For example, the healthcare system for an aging population in New York City provides senior centers for well elders, adult day healthcare centers for those still mobile, nursing homes for the frail, hospital and hospices for the sick and dying. But most of these institutions treat aging as a disease rather than a natural process. They emphasize a medical rather than a social approach, often reducing people to their medical "condition". Diseases are treated, not human beings.

A system that really cares for people should sustain their well-being in their communities, and provide a continuum of care from birth to death. This social model uses each person's individual strengths and integrates him or her into a support system that provides for emotional as well as physical needs. Arts programs can do this by tapping into all aspects of a person's well-being. Thus, a comprehensive healthcare system includes the arts... Read full article

Rediscovery of the Grassroots: Radical or Reactionary Trend? (excerpt)

by Terry Mizrahi, Ph.D

Politicians, professionals and patients seem to have all rediscovered the virtues of so-called “self-help” and grassroots activities or what in the 1970’s Alan Gartner and Frank Riessman identified as the “a professional dimension of helping” and Harry Boyte labeled the “backyard revolution.” This active formation of consumer and community groups has had multiple purposes over the years: providing support, raising consciousness, increasing resources and changing policies; or in the language from Health Advocacy Course I, promoting "case/individual and cause/class advocacy.” To this end, I applaud the many wonderful examples of groups described in this issue, many initiated by alumna of the Sarah Lawrence Health Advocacy Program and their colleagues. These are illustrations of innovative programs advanced by committed and competent professionals.

However, I would like to raise a few caveats, and caution leaders and participants as they advocate for and plan such activities. We are in an era of political and economic conservatism. This has led to a retreat in the government role in meeting human needs, a retrenchment of government-funded benefits and services, a take over of health and human services by the private, corporate sector, and even a redefinition and reframing of health care needs and services so that the public ultimately expects and demands less from their employer, their community and the state. It is also an era of downsizing and deprofessionalization while many public officials advocate for personal responsibility... Read full article

A Managed Care Bill of Rights (excerpt)

by Rachel Grob, M.A.

The rapid conversion from fee-for-service to managed care service delivery models in both the public and private sectors is causing seismic shifts in the health care system. Combined with and further propelling the existing movement away from in-patient and towards ambulatory care, this change augers a concomitant shift in the focus and practice of health advocacy. The need for both “case” and “class” advocacy is and will be greater than ever since cost saving is the primary motivation behind managed care, and since such saving is achieved primarily by restricting utilization (a potential conflict with what’s optimal for the enrollee) and forcing providers to compete on the basis of price (a potential impediment to the development of high-quality delivery systems). But how can the advocate protect the interests of patients and promote the delivery of high-quality services in this tightly controlled, geographically dispersed environment?... Read full article